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Crowdfunding Archive

Crowdfunded Research Uncovers Unknown Gene Variant

Posted by | 1:39pm on Wednesday, August 15, 2012 | 1 Comment

Crowdfunding is the practice of using the Internet to raise small amounts of money from a large base of donors 

The story of four-year-old Maya Nieder begins like that of many children with a rare disorder but has recently taken an amazing turn. Maya’s parents knew early on that she was different. She wasn’t meeting developmental milestones, is unable to speak and has difficulty hearing. Despite countless physician visits and rigorous testing, her condition remained unexplained. Doctors agreed that her condition had a genetic origin, yet six rounds of genetic testing—each time screening for multiple known genetic defects—turned up no definitive explanation or diagnosis.

Maya’s story starts to turn when her family begins working with the Rare Genomics Institute (RGI). The nonprofit organization uses genome sequencing to help children with rare genetic diseases. They take a unique approach—through crowdfunding, RGI “aims to bridge the gap between science and patient care by securing funds for patients needing sequencing.”

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